I know this question has been answered in various forms elsewhere, but would you mind answering again and being very specific? Was there a specific crisis event? Was it your health? Were you concerned about safety? Why did you place your spouse?
Morning Janet, It has been one year this week that John went to the nursing home so I've been reflecting on this subject. For us. it was a series of medical emergencies and safty issues. From Oct. of 08 to April of 09 he was hospitalized seven times. Two of those emergencies were for near fatal GI bleeds.The safty issues were chocking fainting and a coumadin overdose. Last April was the second GI bleed and that's when our Dr.s words came back to me. "You won't always be able to take care of him." After the second GI bleed, John went to a facility for "rehab". I took full advantage of the 100 days offered by medicare to see how John adjusted and how I felt about it. To my great relief he did pretty well. As the 100 days dwindled down I had to made the big decision. No one can help you with that...it's just too personal. My approach was to look at pros and cons. It seemed all the pros were in his coloum and all the cons were in mine. He was in better shape physically than he had been in for a long time. He continues to decline mentally but a controlled diet, regular exercise and scheduled entertainment has made him a healthier guy. The rest of the trash that goes along with this disease (loneliness financial ruin saddness etc.) is on me but I'm getting by. I'm one of the lucky ones. John adjusted well. Much of the decision to place my DH was made by things I had no controll over. If I had to sit on the sofa with him and look in his rootbeer eyes I don't know if I could have done it. I'm sure beyond any doubt I did the right for John. My wish for any of you facing the placement decision is that it goes as well for you as it did for us. xox cs
Jim asked to go. He was adament about it. He had lost the ability to walk without assistance, due to the Motor Neuron Variant of FTD causing his leg muscles to atrophy. He had also lost strength in his arms and could not wash or dress himself and was worried about me hurting myself. Also he was having a terrible time with noise. Any noise or commotion would drive him crazy, even the chatter of the Home Health Aides and our boys each day was too much. He thought the nursing home would be different and I could not convince him otherwise. He managed to find quiet spaces at the NHs but when it came down to needing Hospice he wanted to come home. He was gone from Sept 09 thru Jan 10, came home on 2/01/10. Went into the Hospice House on 3/5 and passed away on 3/7. He never got to the place in his health where I would have chosen to place him. I always wanted him home, but his MND was a very rare varient of FTD, so my experience was very different than most of you. He died still able to carry on a meaningful conversation and knowing all of us. Double edged sword, I guess.
We had spent all our savings on living during the time when he was between work disability and SSDI. We ended up qualifying for Medicaid, (he was too young and did not live long enough for Medicare). Medicaid paid for 100% of his NH costs. I was able to keep his check due to my back disability and the boys. Now though, I only get 1/3 of his SSDI, have a mountain of bills and it looks like I may have to file for banckruptsy. Such is life.
My husband became uncontrollably violent. Rages where ever we went. Took his car and went missing for over 24 hours. "Escaped" from several facilities. Seroquel helped for a while. Became paranoid, threatened neighbors who called the police. Safety for all concerned became the issue.
Janet - for me, it was a combination of my DW's safety and my survival. Like everyone here, you contemplate what is going to be the trigger point and I always concluded it would be something relating to her safety, most likely falling, and I hoped I would have the sense to place her before she was seriously hurt.
I had been taking care of her around the clock and was absolutely exhausted, extremely frustrated and many other things. In February this year DW started having falls (I believe primarily because she was so feeble from refusing to eat) and this escalated to a terrible fall that scared me to death. The decision was very easy at that point even though we have no insurance to pay for it.
She is in a safer place now but continues to be very mean and uncooperative with the staff, won't eat, can rarely get meds in her and she continues to hit and say very mean things. Trying new meds again this week.
Anyway, the only guilt I've felt about placing her is whether I waited too long or not. Thenneck
With me a combination of personal exhaustion and the inability to keep my husband safe. I work full time, had a day time in-home aide but evenings, weekends and nights were all mine. He got to the place where he did not sleep but a few minutes at a time and I was up all night with him. He could not walk without falling, I could not get him into or outof the shower, he was totally incontinent. I was tired and resentful and finally realized that I was not doing him or myself any good. He needed more care than I could give. It was the roughest decision I ever made but I do not regret it. He is content and we now have quality time together.
I haven't faced this yet but my caseworker tells me that in her experience the immediate cause is often the caregiver's lack of sleep. When the LO will no longer let you sleep, coping 24/7 becomes very difficult indeed. (Fortunately my dh sleeps very well now, although there were nights in the earlier stages where he stayed up all night and would not let me sleep. But even then, it was just an incidental thing.)
for me it was for my being exhausted ,lack of sleep 24-7 he was up pacing all night and day, also for him he was starting to fall and missing the toilet, pooping on the floor, placed him on 4-2-09, he passed on 10-23-09 had a fast decline, was in a wheel chair within 2 months. I was hating him for being so sick, after I placed him the love I had for him came back and I could be a better caregiver when visiting him.
I placed my husband after a hospital stay for C Diff & he became abusive on 2 different occasions, where he grabbed me by the neck. He has been in Assisted Living since March 6, 2010. He is still belligerent with the nurses & aides, when being changed. I also think I am a better caregiver when visiting him.
I haven't quite gotten to this point yet, but I've already decided what the tipping point will be. When it is not safe to leave DH home alone, he will have to go to a nursing home. This was a very difficult decision to make, but there it is. We have no family nearby, nobody to take over his care in an emergency if I were to become incapacitated suddenly for any reason. I think about what could happen to DH if I had to go to the hospital suddenly, or if I ran out to the nearby grocery and was involved in a wreck and couldn't get home. Imagining things like that will turn your hair quite gray, believe me.
In the beginning, I wanted to keep DH home with me until he didn't know the difference between being home and being in a nursing home. I now know that won't be possible. I really don't like making this decision, but knowing that I would be leaving him in a very frightening and dangerous situation if something happened to me suddenly, I feel like I have no choice.
I appreciate all these replies. A few days ago someone asked me what usually prompted someone to place a spouse. My husband's not near that point, but I've been thinking about what the point would be for me. It helps to know why others have made the decision. Any other responses?
Jan K--I am wondering if you meant to say assisted living, instead of nursing home? It hasn't been safe for me to leave my husband alone for years due to his cognitive impairment, but he is far from requiring the medical treatment given in nursing homes. Is it possible for you to hire help so that you can get out without him?
I had gone on a leave of absence from work in late October. I was exhausted! Mark was able to have a conversation at Thanksgiving and have dinner with our family. When I placed him, he was not able to have conversations with anyone.
I placed my husband 12/21/09. I hit the end of my rope. The Saturday before I placed him I had a friend visit. When she left Mark peed on my kitchen cabinets. That night he wondered from the house for the first time. It was between 11:00 when I went to bed and 1:00 when my dogs woke me up. My stomach just sank when I couldn't find him. I turned the porch light on and called Medic Alert. Mark showed up when I was on the phone. I think he was trying to find some unlocked doors and couldn't and I think our porch light helped him. He was bare foot, in his pajamas and wet from the rain. I put him back to bed and tied pot and pan lids to the door so I would know if he tried to leave. I didn't get any sleep the rest of the night. The next day he was hallucinating about Viet Nam and I didn't know if he was going to go to a negative space. I was exhausted and I was not able to get through to him. I gave him some of his sleeping pills and put him to bed early. I tied the pot and pan lids to the door knob again. He was tearing the room apart. I was at my wits end and called the Alzheimer's hotline. All the counselors were buzy. I just sat on the floor and cried. I called a girlfriend and all I did was cry. She drove over an hour to sit with me. I tried to sleep but I couldn't. She went home after about 5 hours when I was able to regenerate. The next morning I went to the assisted living facility and they said they could take him. I placed him that afternoon.
Mark was diagnosed 7/2/08 and was about stage 4. When I placed him, he was stage 6.
As usual, all of you have grest responses to Janets inquiry and my experience has been very much like yours. But, my DH was so restless and agitated and getting mean that our children (once they observed it for themselves) kept telling me that I couldn't take care of her any longer. Then, when we went to her dr in Jan., he called me in his office by myself and said that she should be admitted to the psyche ward for evaluation. She was there for two weeks during which time our children made arrangements for her to be admitted to an ALF lockdown facility. She is adjusting and no longer begs and crys for me to take her with me which is a great relief to me. I don't think she remembers our home and she is getting more content as time goes by. It wasn't all that difficult because she was making my life a living H... and I couldn't take it any longer. Hoswever, in all honesty, I would have tried if the children and her dr had not intervined.
I also had the same worries and concerns that Jan K expressed. And they are very real.
My husband's placement in an Alzheimer's ALF came upon the insistence of my chapter Alz Assoc representative. She came to our home and observed him. This followed rages,verbal and physical abuse of me, taking my car keys and charge card, getting lost driving for hours, having to call the police and the Alz Assoc hot line on several occasions, his refusal to let me do the driving even though his doctor told him not to drive, etc, etc.
Adjustment took a while but with much tweaking of meds he is now calm and adjusted. I was even able to drive him to a cardiology appt this week without resistance. Prior to this I hired companion service to bring him to outside appts.
May 22 will be the one year anniversary of his arrival at the ALF. If he didn't become dangerous he would still be at home.
For me, since my husband's pretty passive (but oh! that strong grip!) it will be when I can't get him up and down by myself.. but then maybe I could just let him stay in bed at home and have Hospice (and Andrew the CNA) come in.
Simply, I couldn 't physically care for him any longer and he kept getting sick, needing hospitalization. The decision was made for me by his docs. Jen
My husband has not been placed. I haven't been able to leave him alone for a couple of years now. I've had neighbors who have taken him out to lunch from time to time and that allowed me to get out of the house without him for an hour or two a month. And I've just brought in a home health aide which will give me a stated block of time every week to do things by myself.
He is easy to take care of at this point. I've taken over all the house stuff that he used to do, but he doesn't need much personal help and the aide is helping with that.
I've thought about my lines in the sand for quite a while. Violence is a big one. I'm partially disabled. If he can't walk and move around by himself I won't be able to take care of him. Outside of that, Sandi once said you can hire a lot of help for the cost of a nursing home bed and she is right, you can.
I placed my husband (too late) when he was up most of the night, emptying the fridge and freezer and turning all the lights on. He was also very, very aggressive towards me. I simply could not work all day and take care of him nights and weekends without sleep. 4-5 hours of interrupted sleep just doesn't cut it. He was horrible about taking showers - it used to take me between 1 1/2 to 2 1/2 hours just to get him undressed, showered and dressed again.
Placing him was a blessing for us. I got to enjoy my husband again and spend time with him. I am very glad I did that.
I definitely agree with several of you. When he was at home, there were a few times that I hated him. Now that he's placed, it seems like we love each other all the more. I guess it's not having all the stress. He's adjusted and even told his daughter that he loved it there and everybody was so nice. I see him every other day and sometimes more. We're always happy to see each other. I don't mention home to him tho as I don't want to "open a can of worms". I felt very guilty when I placed him, but now I can see it was for the best.
Mary has been in a nursing home since March 17. I had begun looking at ALF's last fall but just couldn't do it. The behavior change that proved to be the trip wire was not the incontenence, per se, but the combativeness when I needed to provide care for her. For example, she would not sit down once she was standing and would not stand once she was sitting. Just the act of changing her or dressing her requires several sits or stands. I was receiving advice from my support groups that I needed to find a placement. One friend commented that it would take six months to get all the splinters out of my butt because I had been strattling the fence for so long.
Now that she is in the nursing home, all of my worst fears are being realized. She is combative with them, so they have her on Haldol, Cogentin, Lorazapam and Depakote. She is in a wheelchair and probably will never walk again. Once a voracious eater, she just gazes at her plate and, therefore, I feel that I need to be there to feed her at least one decent amount of food a day. In two months she has declined rapidly and I worry that I am hastening her death. Everyone tells me what a good job I did all these years and that my love for her has been an inspiration. I feel that I no longer deserve their compliments.
Maybe I waited too long. Maybe I am just too co-dependent to accept a life apart from her. So, based upon my experience the past two months, Joan's blog today really hit home.
Bob, You are just like everyone here. You did and are doing the best you can so don't beat yourself up over things you can't control. Heck, if we could control anything our LO's woudn't have dementia in the first place. Just hang in there and keep on keeping on. God Bless.
I placed my Dh about 20months ago at our childrens suggestion as they said I was wearing my self out caring for him .He was often up a lot in the night ,I had a monitor so i could hear him as he often had falls and when the bowel incontinence started, at times I was in tears.I felt so guilty at first and wanted him back home but our kids said no and in my heart I knew they were right.Its a good place I chose for him as he had been there for respite before while I had a break ,I visit often and so do the family and so far nothing major by the way of complaints,you have to learn to let the little things go over your head,he is much better cared for than I could do it and we have nice visits ,most of the times he is happy so that makes me feel good too ,I tell him I love him and he says he loves me too but really its the goodies I take for him he looks forward to most ,talk about way to a mans heart is through his stomach lol its true Rosie uk